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Author
Topic: What's the big deal with taking meds (Read 12999 times)

After being diagnosed last March, in April I got my cd4 count of 179 on a Thursday, got meds on Friday and started on Saturday. I had no choice, so it did me no good nor did I have the time to worry about taking them or their side effects. The simple fact was that if I wanted to improve my odds of living a long life I had to start, period. So I it is difficult for me to understand why so many have such anxiety about taking meds. Of course there are short term side effects, which I never really experienced and as my doctor said even if a small % of users have side effects they have to be mentioned even when the majority have none. Long term effects, sure, but do I really have a choice. I guess I do and could refuse to take HAART, but if I am going to do that why not just put a gun to my head.

None of us, HIVers, cancer patients, diabetics, etc, like to take medicine or have chemo or dialysis, but you know sometimes we have to do things we don't like. I guess it's just the way we look at things. I am not criticizing those who dread taking meds or worry about it, I just wish I could understand it better. I know once you start that in all probability it is for the rest of your life and I know it is expensive and a hassle, and in some cases you might to try various combos to find one that works. But really is there a choice? And if there isn't a choice, then why worry or stress out about it, just accept the fact and say, "OK, now what?"

Woods

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"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

I found myself in a similar position in October, 2004 when my CD4 was 169 (with typical procrastination I put off getting blood drawn for 5 months, because I wanted to start HAART in the 200+ range). Given such situations we both did what seemed to be a logical, albeit permanent, step in dealing with HIV. The permanency of adherence is one reason I waited so long to start meds. I knew if I wasn't on the bandwagon I'd quickly fall off. And, I gratuitously repeat with profound gratitude, I let thousands of people before me be the initial guinea pigs.

My short-term side effects were minimal and so far, except for possible lipodystrophy (I refuse to accept any responsibility for having to increase my pants by another size), there are no problems. You and I are some of the lucky ones.

Not everybody is as lucky as you or I. The meds cause regular problems for some and many of the drug-experienced HIVers are running out of options (and even some drug-naive HIVers are). Some who've been on HIV chemo for a long time have experienced serious side effects from long-term use of a toxic substance.

The real point of my blather is initiating HAART is a very serious decision and I fully understand the fear and anxiety others feel about beginning. I hope and believe the situation is better for drug-naive poz people than it's ever been but starting HAART is still a daunting step to take.

Boo

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String up every aristocrat!Out with the priests and let them live on their fat!

And if there isn't a choice, then why worry or stress out about it, just accept the fact and say, "OK, now what?"

Fear of the unknown? Fear of the unexpected? Anticipation of the worst case scenario?

Everyone is different. In my case it was take these or get sick and die quicker.

I take meds twice daily (morning and evening) and like it or not it's what I need to do. I'm not overly concerned with the toxicity because thank God I can't predict the future. A speeding bus could take me out tomorrow, and I would have wasted all that time worrying for nothing. I refuse to live my life in fear of what may or may not be.

Woods, I echo your sentiments. I totally do not understand all the hand-wringing revolved around starting meds. First of all, there are people deciding to wait til it falls from say 300 to 250, or that the % drops another point or some such hair splitting. What do you buy? Another 2 or 3 months off meds, that you totally won't remember five years later. Courting danger at low numbers is not outweighed by avoiding side effects. My first combo made me sick as a dog. After 2 months I ditched it and got on another one. After two years on that the diarrhea became constant and I ditched that and got on another one. Things have been good on the current one for a while. I suspect that some of the delay has nothing to do with a person's fear of medication and its side effects, and everthing to do with a personality that agonizes and delays every decision. Blue sweater or green? Oh god what if it's not the right one? Meds or no meds? Oh god what if I start ten tcells before I have too? Here's my rule of thumb advice for what it's worth - if the idea comes to you that maybe it's time to start - start. If your doctor gives you the option to start - start.

Thanks guys! I was beginning to think there was something wrong with me because I really didn't and don't stress about it and hope I won't. As I read other posts and threads I want to try to understand what others are feeling and I was just having a real hard time with this one.

Woods

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"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it." Nelson Mandela

And if there isn't a choice, then why worry or stress out about it, just accept the fact and say, "OK, now what?"

Fear of the unknown? Fear of the unexpected? Anticipation of the worst case scenario?

Everyone is different. In my case it was take these or get sick and die quicker.

I take meds twice daily (morning and evening) and like it or not it's what I need to do. I'm not overly concerned with the toxicity because thank God I can't predict the future. A speeding bus could take me out tomorrow, and I would have wasted all that time worrying for nothing. I refuse to live my life in fear of what may or may not be.

Daniel

While I agree with all of you I'll admit this has been the biggest issue at hand for me personally. There are so many different views out there on when to start and it is fear of the unknown. What complications will I experience? Will these drugs make me more sick or unable to function? What if I loose my insurance and don't qualify for ADAP and my counts are too high for me to continue to get the meds from the free clinic.

I have heard a wide variety of opinions from others on when to start or why to delay it as long as possible. Just the fact that physicians leave this up to the individual when to start unerves me. No one seems to have the right answer.

I agree that the anxiety and stress is unhealthy, but I think those in my position are just trying to seek out the best information possible and to make an educuated decision.

I understand the concept of well you can either take this or die, but that's a little too simplistic for me. I want as much information as possible before I make a decision.

Clearly, in the past once decent drugs were available everyone was advised to start immediately. At some point a few years back they decided to base it more on an individual basis, and most recently some reports are indicating starting earlier might be better.

If the information was consistent and everyone's stories were consistent I'd have no trouble making my decision. The information isn't consistent and none of the personal stories are consistent so I sift through it all and try to find what has worked best for most people.

It may be just coincidence, but I was thinking this same thing this morning. I deal with a lot of people who like to trot out the "what ifs" until the cows come home - or they end up in the emergency room, two steps away from the morgue.

I have never understood it. I did take slightly longer to begin meds than you. My doc broached the subject in January, I thought about it during February and started in March. It wasn't that I feared starting the meds. I was trying to find out if my insurance would pay for them. It did.

Mind you, this was early on in the cocktail era.

I started a regimen in March 1996, toughed it out until May 1996, switched and have been going strong ever since. Like Razorbill, I found a regimen that worked for me and didn't cauise too many problems.

I think there is too much unnecessary worry about potential side effects. Some people get em, some don't If you get them, then deal with the situation. But life is way too short to fret about what might be.

Edited to add: Wesley, that is the frustrating thing about HIV - it is different for everyone. I have general rules of thumb to go by, and I still believe starting earlier and preserving what immune health you have, is better than letting things go to pot and then trying to rebuild.

There are no hard and fast rules to dictate when someone should start meds.

But I can guarantee that the end resuilt of not taking them make the side effects look like a walk in the park.

the drugs aren't really that big a deal till they start making you sick or give you lipo(fat deposits). Some people have no problems and others do, but either way I would rather be alive feeling like shit than dead. Except when I was on liquid norvir and bunch of other pi's back 90s, than I wasnt sure.

While I agree with all of you I'll admit this has been the biggest issue at hand for me personally. There are so many different views out there on when to start and it is fear of the unknown. What complications will I experience? Will these drugs make me more sick or unable to function? What if I loose my insurance and don't qualify for ADAP and my counts are too high for me to continue to get the meds from the free clinic. I have heard a wide variety of opinions from others on when to start or why to delay it as long as possible. Just the fact that physicians leave this up to the individual when to start unerves me. No one seems to have the right answer.I agree that the anxiety and stress is unhealthy, but I think those in my position are just trying to seek out the best information possible and to make an educuated decision.I understand the concept of well you can either take this or die, but that's a little too simplistic for me. I want as much information as possible before I make a decision.Clearly, in the past once decent drugs were available everyone was advised to start immediately. At some point a few years back they decided to base it more on an individual basis, and most recently some reports are indicating starting earlier might be better. If the information was consistent and everyone's stories were consistent I'd have no trouble making my decision. The information isn't consistent and none of the personal stories are consistent so I sift through it all and try to find what has worked best for most people.

Wesley, I guess I am lucky from the standpoint I haven't had to deal with the worry. My doc said you gotta start and from everything I had read I knew with my cd4 count he was right. I guess I would trade the low cd4 count with a high one and contend with the decisions you are having to make.

I agree with Wesley. I noticed that those who've responded so far had really no choice but to start meds. Pretty easy decision when the doc gives you a year or two to live if you don't start 'em!

But for those of us hovering in the mid 300's to a high of 500, it's not cut and dry.

It is for the rest of your life, everyday. Definitely daunting.

Another concern regards going to work with nasty side affects. Unfortunately, I can't just up and leave the room every 15 minutes.

I think about it every 2-3 months when the labs are done. If I can be med free for another 2-3 months, I'm going to. I know what my limit is, and my doctor is on my butt. She didn't like the last reports direction, so no 3 month wait for me!

It's a big deal if you've been perfectly well and healthy living with HIV and your first ever experience of treatment puts you in hospital!

It took 8 years before my cd4 count and % fell to a level where my doctor recommended starting treatment (272 and 20%). I duly agreed because I didn't know any different. I wasn't stressed about it nor did I have any anxieties I just followed my doctors advice like the good patient I was back then!

Unfortunately I suffered the allergic reaction to Abacavir which meant that within 5 days of starting my cocktail of pills I was admitted into hospital due to the severity of the side effects.

So to go from perfectly well, never a day's illness from HIV to ending up spending a week in hospital due to meds does somewhat cloud my opinion of them.

Also I think the picture is very different if your first ever blood results are under 200 or if you've been ill as a result of HIV. Then you're already at a different point to someone like myself who took 12 years before ever having an HIV related illness.

I do play the numbers game, call it 'hair splitting' if you want but I have 16 years worth of blood results to base my decisions on. Having spent only 22 months on treatment in 16 years I know what works best for me and that seems to be to stay off medication for as long as possible.

And yes, if that now means I might get sick and die sooner then that's a risk I'm prepared to take.

I hope my insight will give you some understanding of why meds are a 'big deal' for some of us.

"for me, it was sort of denial of being ill. there are "AIDS dissident" information on line and they are quite active. I was a total believer in all their theories until I got a thrush, then PCP. " quote egello............................I am very sorry to hear this, egello.Modified to add: Emma is to be commended for learning what her body tolerates and what it doesnt. She, however has had an advantage that some do not have: she has 16 years worth of blood results. For some people that is not the case. They progress rapidly to thrush and PCP.

If the information was consistent and everyone's stories were consistent I'd have no trouble making my decision. The information isn't consistent and none of the personal stories are consistent so I sift through it all and try to find what has worked best for most people.

Don't forget HIV is a very personal virus. What went into you mutates insanely fast into HIV redesigned for just you! What you experience will be unique although you may share common factors with people (like med side effects, drug regimens, opportunistic infections, etc.). HIV is also one of the only maladies in history to be stereotyped as a "gay disease" and there is still plenty of ignorance and stigmatization on that front. On top of that starting HAART is a real event that clearly demarcates your life yesterday from today on (i.e., when you begin HAART... duh), forcing one to face, maybe for the first real time, that she/he has HIV disease. The meds make HIV literally tangible.

The only person who can decide when to go on meds is you. You have to be ready to try whatever it takes to find a combo that doesn't make your life hell and knocks the bejesus out of the virus. If you're lucky your first regimen will be relatively easy to tolerate and if there are side effects they won't last long. No one can authoritatively say what your prospects are past 20 - 25 years since the [modern version of the] virus is only that old. I believe there is reason for optimism but we must be realistic. There is still no cure and the long-term safety and efficacy of current treatments is unknown (or well known as toxic). We have yet to find many, if any, substances that do not harm the human while controlling the virus.

Good luck with your own special little virus.

Boo

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String up every aristocrat!Out with the priests and let them live on their fat!

I was diagnosed with HIV in 1989. In 2000, I started my meds. I realized I had reached a point of no-going-back. Not that I had any choice, mind you. Once the ritual of taking meds becoming part of a daily routine, there isn't a single day when I can just forget I am HIV+. That's the only aspect of starting meds that I see as being objectional. Otherwise, it's extending your stay on this earth. What's not to like. AIDS drugs? Just swallow, and fagetabouit. Get routine check-ups. No sense in fretting and worrying.

"for me, it was sort of denial of being ill. there are "AIDS dissident" information on line and they are quite active. I was a total believer in all their theories until I got a thrush, then PCP. " quote egello............................I am very sorry to hear this, egello.

A prime example of why denialist are not allowed a voice on these forums. They're just too damn dangerous!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I agree with Wesley. I noticed that those who've responded so far had really no choice but to start meds. Pretty easy decision when the doc gives you a year or two to live if you don't start 'em!

But for those of us hovering in the mid 300's to a high of 500, it's not cut and dry.

It is for the rest of your life, everyday. Definitely daunting.

Another concern regards going to work with nasty side affects. Unfortunately, I can't just up and leave the room every 15 minutes.

I think about it every 2-3 months when the labs are done. If I can be med free for another 2-3 months, I'm going to. I know what my limit is, and my doctor is on my butt. She didn't like the last reports direction, so no 3 month wait for me!

Actually, I also have 16 years worth of bloodwork to base my decisions on.

I have spent 11 years on meds, and went at least 11 years without them. I have never had an OI and my lowest CD4 was about 440.

I, however, never wound up in the hospital as a result of the meds. I did have my encounter with the old Saquinavir, which is why I switched to Crixivan.

So, I could understand why Emma is a bit gun shy. But, as Bear said, many people don't have the luxury of many years under their belts before the meds issue arises.

Understanding Emma's reluctance also doesn't address the issue of people staying off meds at all costs because of a fear of what might happen.

The bottom line is it is a given what will happen without them - at least for most everyone except the elite non-progressors.

Maybe that's why I have trouble understanding. I have seen the outcome without meds. I guess that's why, for me, it was a no-brainer.

A prime example of why denialist are not allowed a voice on these forums. They're just too damn dangerous!

Sorry you had to go through that egello!

Ann

Anne, they aren't really "denialist" they are dissidents, they do realize that peopel are getting sick, but their theories of why and how to treat them are so hoakie,,,, but being a dummy and punk that I am , I believed in all that...

I was scared about NOT starting meds. On my last visit to the hospital (31/Jan/2007) I met a new Dr. because mine was fully booked (public health system). This Dr. went through my file and said my CD4 count was 800. I told him that what I really wanted to know is if I was already undetectable. He answered I must have been undetectable for a long time with that counts...Then he realized I had started meds 5 months ago with a CD4 count of 503. He said nobody wants to start meds so "early".He didnīt say if it was a good or bad choice. My Dr. did not say anything either when I decided to start.I think it is not a big deal taking meds. It is like brushing your teeth or shaving every morning. Of course I am new in this I am not suffering form lipoathrophy or any other toxicity yet. But why should I worry about the future? Maybe there are much more worst things waiting for me. Lets start suffering when there is really a reason to do so. Swallowing two pills a day is easier than thinking what to cook for lunch.

We are placing a great deal of responsibility upon a person to decide whether to start meds early, late, or not at all. We are also presupposing that the individual is making an informed, intelligent decision. But, as someone noted, some people can't decide whether its right to wear blue or green on a given day. Others are seeing doctors whom they do not feel they can trust. Others may be making the decision based on financial factors.

Reality tells us that some people avoid taking meds for fear of side effects (a whole forum just for that topic!), possibly because of fear of the meds themselves (emma had a bad allergic reaction and has a greater fear of meds than mjmel who simply finds the daily reminder that he is HIV+ objectionable), or possibly because of denial (i.e. you are less HIV+ if you AREN'T on meds? is this the demarcation of which boo speaks? or AIDS dissident information per egello). So while the question is subjective, people seek objective standards by which to make the decision (or not make a decision, as the CD4 was just too low and the VL too high thus ruling out all alternatives).

It is the application of objective standards to subjective circumstances that is the domain of those from whom we seek advice and call professionals. Certainly, the term professional has been abused lately so that in common parlance it merely means primary occupation, such as a professional "waitress" or "dog groomer", etc. But, the term professional formerly was restricted to those who dealt with the human condition: doctors, lawyers, priests, and architects.

I think part of the problem lies in people giving too great a weight to the experiences of others, especially where individual facts and circumstances may be critical to determination of the outcome. As Wesley points out, the information isn't consistent. As Boo points out, HIV is a very personal virus. Therefore, a person considering whether to start meds, must consider the advise of the medical professional whose education, clinical experience, and individual diagnosis are calculated to provide the best possible outcome for the patient and give it the greatest weight.

I think, AustinWesley, you want too much. You want to distill all our experiences and find a happy medium. There's no bell curve of experience. You want to be assured of financial and insurance security. There's no such thing. You want a professional to tell you what's right. It's your call. And you know, no matter how good you get it down, and how thought out it is, it may all fuck up anyway. Such is life. Do, don't think. (Well think a little.)

My humble opinion about the controversy of starting meds or not is based on what others had said earlier fear of the unknown. We read so much about the side-effect, lipo and strict regimen which is a reminder that if we don't take these medications properly we can die. When you are diagnosed and you don't start meds, I suppose people feel a sense of power, they feel that their body is strong and capable of beating this virus for many years. I guess when the doctor tells you it's time for you to start meds it's almost like hearing you either take this or you die. It is almost like a reminder that this is the beginning of the end. It's based on fear and adapting on a lifestyle with meds. A lifetime of meds is also overwhelming., if the docs only gave us hope that med interruptions were possible to do, i think I wouldn't mind starting meds, but we aren't even allowed a holiday.

I was a LTNP and went one month shy of 21 years before my CD4s crashed and was hospitalized for a month. The virus work different ways. The meds are alot better than in the beginning with AZT which at the time took more lives than it helped. That was the only drug there was. I'm greatful for being able to go that long without meds. I have worse meds to take than my HIV medications.

I think, AustinWesley, you want too much. You want to distill all our experiences and find a happy medium. There's no bell curve of experience. You want to be assured of financial and insurance security. There's no such thing. You want a professional to tell you what's right. It's your call. And you know, no matter how good you get it down, and how thought out it is, it may all fuck up anyway. Such is life. Do, don't think. (Well think a little.)

I don't think I'm asking too much. I don't value my doctor's opinions all that highly. I have to live with this, not them.

But in essence, you are correct in your analysis of what I'm doing although I probably wouldn't use the term distill. I would say yes I do pay attention to the collective experiences of everyone and seek out the similarities among the people who've managed to maintain a reasonable quality of life for as long as possible.

And by that, I mean, a reasonable quality of life that I can live with. My standards are different than others. To each their own!

Sure, I could have that attitude that whatever will be will be and to an extent I do. I realize I have to learn to live in ambiguity much of the time, but I don't feel for me ignorance is bliss either.

I don't think I'm wasting my time at all. In fact, quite the contrary. So, isn't that why most of us are here? To learn from one another and share.

I don't think I'm asking too much. I don't value my doctor's opinions all that highly. I have to live with this, not them.

But in essence, you are correct in your analysis of what I'm doing although I probably wouldn't use the term distill. I would say yes I do pay attention to the collective experiences of everyone and seek out the similarities among the people who've managed to maintain a reasonable quality of life for as long as possible.

And by that, I mean, a reasonable quality of life that I can live with. My standards are different than others. To each their own!

Sure, I could have that attitude that whatever will be will be and to an extent I do. I realize I have to learn to live in ambiguity much of the time, but I don't feel for me ignorance is bliss either.

I don't think I'm wasting my time at all. In fact, quite the contrary. So, isn't that why most of us are here? To learn from one another and share.

Austin, I assume you are young and have not started meds yet. Don't know your numbers but from my experience, meds is something we all must encounter and although it is best to save the meds for when you CD4 cells reach a 350 when you see those CD4 number decline even more than 350, you better start getting yourself ready to start meds. It's not a decision on why? maybe i can wait. Well if you wait for the next labs to see a number in the 200's be prepared to go through some physical changes such as thrush, diahhrea,fatigues and more stuff. I went through a short period of fatigue and have thrush having a CD4 count in the low 200's. That is a sign that AIDS is just around the corner and that is alot scarier than starting meds at 350 where you can actually sit down and decide what day you will start, what regimen works best for you and so forth. I am looking forward to meds right now because I feel like any day now I can come up with an OI and then be in the hospital, and when you end up in the hospital with PCP or anything else, then you know you have AIDS. PCP sometimes happends when you have a count in the 200's or even in the high 100's. So listen to what the majority of docs suggest and start your meds once you reach the standard number of 350 and stop worrying about side effects. IF it happends in 2007 or in 2008 they still are gonna occur. I bought my imodium and got my bucket of puke next to my bed and I am ready to fight this freaking viruse who is messing with immune system. If I had the opportunity to start at a CD4 count of 350 or a bit higher I would have now that I know that I see the thrush and feel like I am loosing weight.

I wonder if part of the issue is that when you start taking meds you can no longer deny that your life has changed because you have HIV/AIDS. My thought is that while you don't have to take the medicine you can live in a partial denial of the inevitable.

For my part, there was not question of having to take medicine. My cd4s were 145 and my vl was 39k. Also, I had already had shingles, mono and a string of other illnesses that were pointing to the fact that my immune system was no longer able to fight off illnesses.

Further, I was already taking meds daily for high blood pressure, so I was able to fall into the daily regimine. So taking a few more pills wasn't the issue. The issue for me was WHAT I was taking them for...

Ty

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I don't feel ANY power over my HIV. It will be what it will be and do what it will do. And I will carefully monitor the #'s. My doc told me to start considering the meds when I had 347 CD4's. I went back in in 6 weeks, and CD4's went to 507. She told me she had no argument for me starting meds at the time. When the next labs were 398, she has me back in 2 months instead of 3.

Of course the day will come, and I will take the meds. I know that. It's been a little over a year since I'm infected. Wesley also.

I will owe uncle sam about 9k for my 2006 taxes. Do you really think I'm sending the check in today??

ROD- were you on a 3 month lab schedule when your CD4's plummeted? Just curious.

I think I am the only person on here looking forward to starting meds. I look at it like this, my body has been fighting this virus on it's own for 10 years this year. It can only do so much and considering some of the posts I have read on here, I do consider that a blessing. I also do not want to wait til my body is too weak to fight with the help of meds. I have had this talk with my I.D. doc and he feel that if my cd4 drops below 300 then it's time. At the moment my cd4 is 372, it just increased from 307.

When I first got here, I was about trying to give those good positive thoughts, and I still do at times. I can not second guess how someone is feeling or how this virus is affecting them. I only know how it is affecting me. I also feel that I can't tell someone when to start meds, that is their choice and up to their doctor. I can't tell them how to feel about starting them but only my opinion on how I feel about starting them. I really don't think I will have a problem with adherence at all since I am getting the experience of taking pills now because of my diabetes. But my pillbox reminds me to take them and due to my sleeping patterns it's easy to keep track.

Thanks for your insight. Have your counts remained over 300 for 10 years now? I can understand delaying meds if I had these circumstances especially in light of diabetes as well. My mom's diabetic and runs in the family so I've made sure I do what I can to avoid that.

And Paul, that tax bit just made me bout burst out laughing I can so relate.

If my counts had been below 200 I would have no question about the med debate, but someone with experience such as Mark or Queen or Paul who present factual information have my interest.

To me its a matter of mind over matter. I watched David give up, get tired of fighting and literally waste away. I loved him dearly and hated that he had given up...leaving me behind without him. Selfish me...but I knew it was his choice and I had to abide by it. He had been positive 16 years and had on two other occassions almost died but somehow regained his lust for life and got out of bed. I suspect I had thought he'd do the same thing again but he did not. He died at 32.

As far as taking meds...I just began again. Having contracted Steven Johnson's Syndrome in March of 2005....I discovered first hand what a severe reaction to medication can do to the human body and the human spirit. I had just signed onto Aidsmeds when I contracted SJS so when I returned from the hospital and logged back on....I found many here who gave me the support to carry on despite one challenge after another....those who know me know my story. I was taken off meds in the hospital and chose not to take them until recently when my numbers made it worth the risk of contracting SJS again necessary. So far the combination I'm taking seems to be working for me....side effect wise....we'll have to see my labs later this month to know if they're working.

It was only after connecting with people here that I manage to find my way to a better place...between mourning David, recovering from a suicide attempt, SJS and then Hurricane Katrina taking most of my possessions....I thought life had really crouched over me and dropped a big one on my head. I was wrong. Very wrong..... The old saying "what doesn't kill us makes us stronger" is very true. Having gone thru all the things I had to go thru during the two years that followed David's death....I can honestly tell you now its a matter of mind over matter. Nothing is written in stone and anything is possible. Two years ago I couldn't even pay my rent...I was lonely and disconnected from the world....I was depressed beyond belief and miserable.....and NOW Today.......everything is different. I have a new home, a new car and yes a new lover. Money is no longer an issue and I spend my days (the ones I can get out and about) trying to find ways to help others like myself. My life is no longer about just me....its about the people that inhabit this world with me. It's about making a difference..............and making the most of this gift we call LIFE.

Thanks for your insight. Have your counts remained over 300 for 10 years now? I can understand delaying meds if I had these circumstances especially in light of diabetes as well. My mom's diabetic and runs in the family so I've made sure I do what I can to avoid that.

And Paul, that tax bit just made me bout burst out laughing I can so relate.

If my counts had been below 200 I would have no question about the med debate, but someone with experience such as Mark or Queen or Paul who present factual information have my interest.

I'm not out to win any popularity contests. I'm here to learn.

No problem, Wesley, I am here to share if nothing else. Yes, my cd4 has always been over 300, the 307 was the lowest it has ever been. My doc will not start until under 300 but my diabetes also has to be in check too. This is something that has been driving my primary doctor crazy. He increased my doses on 2 out of the 3 meds I take now. I have also started on Tricor and am on an aspirin regime.

but ill tell ya why itz a big deal to take meds; especially starting. they make you sick as F^%K!. diagnosed w/ cd4 104 & vl 156K. yikes. no question there....med time. doc gave me some slips and said c me 4 wks. well got the bottles on fri fisrt dose <kaletra&truva>. by sunday i was itchinh like crazy. w/ in a week i was so nauseated i was suicidal! cant sit up, cant sit down, cant lie down. i ate grilled cheese for 3 months....yuck. and lets no forget my good friend mr rash. im jealious of this people who can pop some pills and move on down the highway.

doc ask me y i dont get tested sooner? i think well i squeezed one extra year outa life. i dont know...medically if ya gota have it take it. but humbley i say wait till last possible moment,

Woods, Austin, and others,I do agree that the meds issue is very personal. I was diagnosed just over a year ago and was on meds within 3 months. My take was that I wanted to help my body fight this virus. I did lots of reading and decided that for me, early intervention was the route to go. And I think more and more research is saying that starting somewhat earlier is better. But it is a very personal decision. I started with a CD4 count around 520. Now I'm up to 707 and 24%.

I was somewhat scared to start meds. I took a week off work to try to make it through the side effects. I remember taking my first dose and laying there in bed thinking... hummm, maybe they didn't give me the real stuff. Ultimately I did have a few issues to deal with. Weeks 3 and 4 were pretty tough with a very rare side effect. But for me, I wasn't sick at my stomach, I only had a slight rash, and after I got through the bout with leg pain, things have truly been smooth sailing. Yes, I'll have one of those groggy mornings every now and then, but overall I know for me I made the right choice to start when I did. I say my VL plummett from over 66,000 to about 600 in just a month and to undetectable in 2 months.

I know there have been some horror stories about starting meds. But for me, it was reallly no big deal. Yes, I had to change one of them after only 17 days. But the doctor made the change and we got things lined out and now I'm back to working more than I care to and still planning on being around for a long and productive life.

That's pretty impressive. I'm assuming you are Type 2? That's interesting. I'm now wondering if you had already healthier eating or exercise habits due to the diabetes?

Or are ya just lucky and have good genes?

Thx for responding.

Wesley

Yeah, I consider myself blessed indeed. Yes, I am type 2 and just diagnosed about 2 years ago. I really don't exercise, not that I don't want to but doesn't have money for Y membership, that like over 200 bucks. I have been watching the info commercials on the home exercise machines but I live in a small apartment. I was thinking of some exercise dvds...What ya think? I don't consider myself lucky but instead blessed.

And I STILL find it hard to understand why a friend of mine absolutely refused meds. No way, he said. And he died in 2004, with a CD4 count of 4.

Logged

Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

I remember how the doc and nurse were hounding me about starting meds. (Maybe I was in the hit hard hit fast era). Guess I was very lucky to start at CD4 330 with what is now believed. Looking back in time, if I could have waited 3 or 6 mths longer, no big deal now.

Starting on a first line combo today, with good adherence a must, would be great news. I would not (imo) let my immune system get too chewed up anticipating at least some sort of therapeutic vaccine in the near future.

I had to go on meds right at disagnosis (220 cd4 June 1997) it was only 4 months that retrovirals were covered by social security in my country of origin.My dr didnt tell me so much about side effects then - not all about them was known - so I never really wondered if it were the hiv, the recovery, the stress or the side effects, I just thought survive, survive, survive.

I understand for some people with a poz diagnosis but good cd4 numbers it must be excruciating to see the cd4s recede and the date for starting meds getting nearer and the worry about side effects, which can have unrealistic aspects as all fears have, getting bigger. I dunno how well I would have coped with that constant thought.

And a friend of mine who was hiv poz a little longer than me, since before meds were really cocktails that started to work, never wanted to take medecine, also when he knew I was and saw me doing well, he died in the summer of 2001, I respect his choice though I find it difficult that he's not live anymore. He was a writer , he wrote under the pseudonym Laurent Degraeve, his last book was a manuscript found in his drawer after his passing, it' s in French "Je suis un assassin" (= I'm an assassin), editions du Rocher, he wrote 4 books that did well, he was barely 30. Sorry for veering off topic here.

Thanks Woods for posting such an interesting topic. I find it interesting how everyone has their own personal outlook on taking meds.

I started on AZT in 84, as it was the only drug available. I was told to take 12 pills every 4 hours. This went on for over a year. When a new drug came along, I was so happy I just took it, I didn't even bother to read the side effects, I was too busy being happy that a new option was available. I had NO choice, so I figured why bother even investigating.

So I agree with those of us who think it was "A no brain-er." Life is all about perspective, and this thread points that out more clearly then most.

Here's to LIVING! We all should be grateful for all of the drugs that are now available. I for sure am!

In answer to your question Wesley...I started out on Truvada and Sustiva. After taking Bextra ( a non narcotic pain killer)which they prescribed for a cracked rib and to get me off narcotic pain killers, I contracted Steven Johnson's Syndrome...a rare and sometimes fatal chemical reaction to medication. To understand it...just imagine yourself being microwaved cookedinside and out. I wasn't suppose to survive....they told David's mother (whom they mistook for my mother) that I wouldn'tlive out the week....of course I surprised them did I. I lost all my toe nails and finger nails...my tongue and the inside of mymouth peeled....as did my hands, feet, arms and legs but mostly my trunk...my chest and my back. Ordinarily they transfer youto a burn unit but Gulfport Memorial Hospital didn't have a burn unit.... Now once you've contracted SJS....you're three or fourtimes more likely to contract it again....and with that in mind I chose not to return to my med's.....

A few months ago my numbers dropped CD4:200/VL 100,000+ and my doctor pretty much insisted it was time to startthe meds again. We both agreed that Sustiva was not an option ....so I'm currently taking Truvada/ Noivir / Rayatez....withLori tab 10's for pain...Soma...muscle relaxers....and when needed for depression....ativan I refuse to take anti-depressants ona daily basis... Everytime I take my meds I wonder "will I contract SJS again?" believe me if you've ever been thru it....you don'tthink you'll survive it again and when you die from SJS....its usually because your brain is literally cooking...so imagine what thoughtsand outrageous imaginings one might have....its terrifying....more so than dying of AIDS. And I know because I watched David dieeveryday for seven months while he was in hospice. I know this more than answers your question but I wanted you and others tosee the larger picture insofar as med's and I are concerned.

One thing I had clear in my mind is that I didnīt want my body to waste energy fighting against this virus. I prefered the meds to do that work for me and let my body use its resources for better things.I only know the possible side effect of the meds I take of what I read in these forums. I have never read the instructions leaflet contained in the meds. I just throw the leaflet to the trash bin. If you donīt think about side effects an about the what ifs, life is much better.

Yes, I suppose it is a "no-brainer" that you need to take meds if you have a very low CD4 count or are experiencing OIs. But for a lot of us, it is not that clear cut, we find ourselves in the grey zone where you have to weigh up pros and cons. To me, it is not a trivial thing. The big deal for me is:

- the side effects - somewhat worried about the short-term ones (david25luvit's story absolutely terrifies me, even though I appreciate it is a rare condition), but much more worried about the long-term ones, particularly those that might only become apparently many years down the line. They are particularly worrying because once I start the meds then I really will need to keep going - yes, I might be able to shift to another combo but who's to say they won't be equally problematic? Deep down, I suppose the fear of the more disfiguring side effects (lipodistropy/lipoastrophy) plays a big part in my anxiety. Yes, there is a decent chance I won't experience any at all but that doesn't mean I don't worry about the small chance I will.

- the sense that the clock then starts ticking - once I start then it seems to me that the chances of a failing regime gradually increases and the toxicity starts to build - there was also that recent bit of research suggesting you can expect an average of 24 years on the combos:http://www.nam.org.uk/en/news/23C53AB1-15B6-4F44-A50E-5605C412C2B7.aspThat being the case, it makes every bit of sense to delay the onset of treatment until it is necessary.

- however way I turn it starting meds is going to be a milestone in the trajectory of my living with HIV - when first diagnosed I definitely had the sense that starting meds would be 'the beginning of the end'. Then someone pointed out to be that you could equally see it as 'the end of the beginning' - I'm starting to come round to that way of thinking. It will, however, still be a dividing line of sorts and a very stark reminder that my body no longer can fight the virus without outside help.

Don't get me wrong - I am very, very grateful the meds are there, side effects or no side effects. I am also very grateful to be living in a place where I won't need to also worry about financing them - I can only imagine how stressful it must be to worry about that on top of everything else too. I am also cautiously optimistic that the future will bring further improvements, and perhaps even a therapeutic vaccine.

The meds are definitely my friends. And I am certainly very encouraged that so many of those already on meds feel it is uncontroversial - it gives me some belief it may in the end seem totally uncontroversial to me too once I start. For now - and however irrational it may seem to some - it is a big deal to me.

- the sense that the clock then starts ticking - once I start then it seems to me that the chances of a failing regime gradually increases and the toxicity starts to build - there was also that recent bit of research suggesting you can expect an average of 24 years on the combos:http://www.nam.org.uk/en/news/23C53AB1-15B6-4F44-A50E-5605C412C2B7.aspThat being the case, it makes every bit of sense to delay the onset of treatment until it is necessary.

I've talked to many people who have been HIV positive for over 20 years who were told that they were going to die when no drugs were available and many of them continued to live, Then another person told me that when HAART was available in 96' he was told by his doctor that it would only be effective for about 5 years and he has been on the same regimen for 10 years now and with an undetectable VL. Now there are telling us that we can expect to live 24 years on HAART but that is also not including the new drugs that are expected to come out in 5 to 10 years by then hopefully better and less toxic drugs will become available in the market which means that the number may increase to more years of life expectation. So my opinion is to not expect to live the number of years a study tells you or even experts in medicine tell you cause, plan to live more because better drugs will come about.